Amy's story: IVF endo warrior

Our journey to become parents and complete our family has been a long one; 10 years, on and off. For me, it has been the absolute best and utter worst experience of my life, simultaneously. I have experienced the highest of highs, the lowest of lows and learnt more about myself than I ever knew possible.

We got married in 2012, at the age of 26, and began trying for a baby straight away. With each month that passed, I became more and more consumed. Pregnancy was all that I would read about. Pregnant women were all I could see no matter where I looked. I obsessed over my cycle, my diet and our sex life with such scrutiny.

After a couple of years with no progress, I casually mentioned to my GP that we were trying to conceive. She said I was still young and if we hadn’t fallen pregnant within the next 12 months, we should make an appointment to see her.

I continued to obsess over everything and my mental health spiralled out of control. I stopped going out. I put myself on extreme diets as I had convinced myself that I couldn’t get pregnant because I was eating grains or sugar. I threw out all of our cleaning products, toxic toiletries and plastic containers in case it was the environmental toxins that were our problem. I spent every spare second scouring the internet trying to find a solution, but I didn’t know what I was finding a solution for.

At the age of 30, I went back to the GP and explained that we had been trying for a few years and nothing had happened. My cycles were becoming increasingly irregular (hello stress!) but my GP still assured me that I was young and we likely had nothing to worry about. She ran a few screening tests to put our minds at ease, one being AMH. This was our first inkling that our path to parenthood might not be so straightforward. My AMH was only 2.1 which was equivalent to that of a woman 10 years older than my chronological age. We were referred onto a fertility specialist and advised that our best hope would be IVF.

My first round of IVF was easy

The side effects of the hormones were minor and we collected 7 eggs which resulted in 7 embryos. Over the next 6 months, we did 6 back to back embryo transfers. After our 6th unsuccessful transfer, our specialist advised that it was a good time to do another egg collection. We asked her to investigate our repeated implantation failures and what we could do differently going forward, but she assured us it was just a numbers game and it wasn’t our time. I’m a big believer that doing the same thing over and over and expecting a different result is the definition of insanity. With that, we decided it was time to find a new specialist.

Our first clinic was chosen by my GP. This time, I did my research and selected a specialist with excellent credentials. He was a Deputy Medical Director so I assumed he would offer a fresh perspective. At our first appointment, he reviewed our medical records and said that in his professional opinion we did not need IVF. He suggested we continue trying for 12-18 months and if we were not successful in that time frame he would be happy for us to go onto IVF. I was absolutely shattered. The first 4 years of our marriage were consumed by trying for a baby. We were living in some sort of half-life, watching everyone start their families and there was no end in sight.

Up until this point we kept our struggle entirely to ourselves. We were terrified of what people would think if they found out we were struggling to conceive. We lived in fear with each anniversary or birthday that someone would ask when we were going to have kids, knowing that we were doing everything in our control, but it wasn’t enough.

One day at work, a colleague harmlessly asked if I had children and I broke down in tears and confessed everything to her. It had been such a heavy load to carry each day, I’m not sure how I held it together for as long as I did. Opening up to her was a turning point in our journey. She was a fellow IVF warrior and became the person I went to for advice or when I needed lifting up on those dark days. Because of her personal recommendation, I made an appointment with her fertility specialist.

On to another new doctor

At our first appointment, he suggested some implantation screening. We proceeded with our second stimulated cycle and were able to retrieve 5 eggs, which resulted in 2 embryos. Our implantation screening tests revealed nothing, which suggested that our issue could have been egg quality and abnormal embryos. We had our 2 embryos tested and frozen, and proceeded with a third, back-to-back stimulated cycle while we waited for the results.

From this cycle, we retrieved 5 eggs which resulted in 3 embryos. We wanted to have these embryos tested as well, but our specialist suggested a fresh transfer. We were very reluctant given our history, but he assured us that if it was unsuccessful, the transfer itself would give him valuable information that he could use to formulate a plan for next time. So we transferred 1 embryo and had the other 2 tested.

The next two weeks were a bit of a blur. I was obsessively reading about PGS testing, scouring forums for other people’s statistics and researching reproductive immunologists after some advice from my friend. I attended my beta bloods like any routine blood test and went about my day.

Nothing, and I mean NOTHING could have prepared me for the phone call I received later that day. For the first time in 5 years I was pregnant. I loved being pregnant. I was extremely anxious every single day, but I loved being pregnant. I had a new appreciation for my body and what it was capable of. I loved my growing bump and admired my reflection in every window. My pregnancy was fairly uneventful and the love of my life, Ben, was born at 40 weeks.

Trying for baby number 2

When Ben turned 18 months, we were ready to try again. I made an appointment with my GP to get referred to our fertility specialist. She asked me about my cycle since pregnancy and that month my period just so happened to be late. She suggested we do a pregnancy test, which seemed like a complete waste of time to me as I knew we would need help to conceive, but I did one anyway. I was bloody pregnant. We had conceived naturally.

The GP went on to explain that for some couples, IVF almost “resets” their system and makes it easier for them to conceive next time. She gave me a referral for an obstetrician and sent me on my way. I booked my dating scan for 8 weeks on the dot as they wouldn’t allow me to come any earlier. My dating scan was booked on a Wednesday and on the Friday, before I started bleeding.

After 6 months, we decided we were ready to try again. We tried naturally and I fell pregnant on my first cycle. I went straight to the doctor and pleaded for some support. Again I was told that it was great news that I had fallen pregnant naturally, it was very uncommon to miscarry twice in a row and that I didn’t need any intervention. I booked my dating scan for 8 weeks, desperate for some confirmation that this was a viable pregnancy. A few days before my appointment, I started bleeding again. Another miscarriage.

My endo diagnosis

I’ve never been much of a spiritual person, but I firmly believe that I was strongly guided in my next step. I heard the name of a Gynaecologist one day who specialised in Endometriosis. At first I thought nothing of it as I didn’t have any of the symptoms. But I kept hearing her name, so I made an appointment. She suggested a laparoscopy to check for Endometriosis and although I was hesitant, it was one of the few things that had never been investigated so I went ahead with it.

In August 2021, I was diagnosed with Stage 3 Endometriosis which, in part, explains our difficulty to conceive. Following my laparoscopy we planned a frozen embryo transfer with our best embryo. A few days after transfer, I had a nose bleed which is a common early pregnancy symptom for me. I knew it had been successful. The lines on my home pregnancy tests progressed perfectly and my blood tests showed that my HCG was doubling every 2 days. Perfect! At our 6 week scan, we saw only an empty sac. It was a blighted ovum.

Our specialist informed us that this can happen and that it is uncommon to happen twice. Given that I had been told those exact words about having 2 or 3 consecutive miscarriages, yet it had happened to me, I knew I needed to dig deeper.

We booked an appointment with a new fertility specialist, one that is well known for treating difficult cases and has much success using immune protocols. At our first appointment, he suggested a barrage of tests, which revealed that my husband and I are a partial HLA DQalpha match. Following this diagnosis, we were referred to a Reproductive Immunologist, based in Melbourne, who has recommended LMIT and an aggressive immune protocol alongside our next embryo transfer.

When I think about everything that we’ve been through, I’m not sure where we found the strength to keep going. Our son is our greatest achievement and we thank the universe for him every single day. How he came from a body riddled with Endometriosis and an overactive immune system, I will never truly understand. In hindsight, it all seems so obvious. The gut issues, the irregular cycles, the low AMH, the back pain and hormonal imbalances were all signs that my body was at war with an invisible enemy.

When I bled following pregnancies 2 and 3, there was no pain or cramping. I didn’t pass the sac as I’ve heard from other women. I now suspect that they too may have been blighted ovums.

Where to next?

We’re so deeply invested in this that we are not ready to give up just yet. We have three beautiful, PGS tested embryos in the freezer. After LMIT, we will continue with frozen embryo transfers, alongside an immune protocol until we get our positive. My AMH is now 0.6 which makes it unlikely that we will be able to retrieve any more eggs.

If we are not able to complete our family, then we will look into using donor eggs from my beautiful sister. I know we still have a long road ahead of us, but finally having some answers and the support of an immune protocol gives me hope that we might just get to bring home our baby.

Amy shares her story from Gold Coast, Australia.

Thank you for sharing x Emma & Lynette.

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